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WEll I have given the Flornef a try in the AM- usually 1 or 2 hrs befor I get out of bed. It does seem to give me a bit of extra energy.. I have not been on it long enought to really no... it might just be a good 2 days! But I have gotten these weird stomach pains- kind of crampy and spasmy. Sometimes when I tkae my other meds I really notice it.... anyone have this??

Hi Madeline! Well I have to say I was happy to see this post! I one time heard that a dr had said that riding would be good for the leg muscles.... however not my dr. Anyhow prior to me being sick, June 05, I was a full time trainer and showed extensivley all over the midwest, and then wintered in FL for there season. I would ride like 8 horses a day, and also was a maneger at a farm in FL- so I was VERY into the riding- it WAS my life. Then Last summer the POTS just hit really hard, however i had one horse that was souley mine- and it was the best thing to have. Riding clearly is my passion.... and having that horse MADE me get out of bed every morning and go and ride- some days I would get on and ride for only 10 mins and get off- but I always made myself do 10 mins- it was weird- but sometimes I would just get over that 'hump' and other days I couldnt- getting over that hump was VERY hard, and painful- but I made myself do it. There where days tho when my arms hurt to much to even pick up the reins... or I got dizzy and when I felt something like that come on- I Immediatly stopped. Once we got the symptoms somewhat under control with meds I was able to increase the amount of riding I did. I now ride 3-5 horses everyday. But its weird- cause usually that first horse is a killer- its like getting over that hump- but when I do I feel more energized and ready to go- its that 'after excercise' energy burst. So personally the riding has been the best thing for me- I have never once been bed ridden- but I know that it is becuase I HAVE to go and ride that one horse. I know that my dr sort of mentioned to my mom for me to be really careful- but at the end of the day, for me I needed to be happy.. and the riding was the only thing that made me feel good in a painful part of my life. There are still many days where I feel so beat to do it- but I always try..... They are actualy adding horses to so mayn theraputic and mental clinics becuase the riding is so good for the balance, mind, cordination, strenght, ect ect So I guess go with what feels right to you... for me- I know all the dangers- but I have just as many when I get in that car, or attempt to bike ride, or do the stairs. Good luck tommorow... and let me know how it went for you!!

Thanks for all the replies. I must clarify- I as off right now- DO NOT get nasuas- my Doc just said take .1 mg 1 time a day with food- so that I dont become nausas as a side effect. As far as the Gi probs.. we are still in the process of figuring that out- my barium swallow showed dysmotility in esophugus- and my dc thinks that maybe my Raunderds is cuasing my esphugus muscle to not work properly..... getting scoped next month. My thing is that once I start eating- I regerjatate- so I usually skip breakfast and take my pills at 5 am 7 and 9- and then again at 10 pm- and if I do eat before 9 I take them at 1 30 am. Else like I said, the food doesnt stay down- but with my gabupenten that I take, I dont need to take it with food- so it isnt as big a prob. But will try the saltines, and the am is sounding like something I should try. Thanks!!

My cardiac electrophys just put me on Florinef and said to take it with food. He laughed when he said that becuase I cant keep to much food down- Gi says Im regerjatating. SO I asked if I could take it right before I go to bed with a piece of bread so I dont get nausaus. He said yes. Asked my gerneral POTS dr if I could start taking it (heaven forbid I dont get her approval! ) She siad take it in am. But like I siad, was worried about foods that will keep it down, at least at night b 4 bed, I can eat and I dont wake up in the middle- so its gaurenteed to stay down. What do you all think? When am I going to see the most results? Any food suggestions? THANKS!

Yes, I do mean the clinic in Weston. I have never heard about the U of M, but I will look into that. Please let me know if you know anyone good! Thanks!

I will be moving to FL for the winter soon, and the Cleveland Clinic is only an hour away from me. So I am going to go there for another opinion. Has anyone ever been there? Any drs that you would recommend? I def need a POTS dr, but also the way my esophugus has been, maybe will need to continue with a GI as well. Any suggestions...? Thanks!!

thanks for the reply, to be honest I really did not understand what this dr was trying to tell me.. thats why I thought I would ask on the forum. I think his point he was tying to make to me is that the stuff going to my heart might not be correct anymore... and to get it checked out............ again thanks for the reply!

I was just at the GI dr and was dx with Raynaud's! He thinks that there might be a link to my regergitating and Raynaud's. Anyone else ever had this? I just had a barium test today... and the radiology dr said that I had esophugus dysmotility. But everything radiography wise looked good..... so i guess more tests to come. But wondering about the Raynaud's, could this be cuaseing the dysmotility??

A dr I know that works with balnance and people that fall alot was talking about Electrical Conduction and POTS ptients. He was saying that sometimes the arteries to the heart dont have the same path- and that the EC done by a cardiologist that specializes in it would be good to do, especially when he heard I was only 19. Has anyone ever heard or done this? I was sorta zoning during the conversation.. so only picked up 1/2 the info!

I am so sorry to hear that you are in the hospital, and not feeling well. Keep sleepin so your body can heal at its quickest and you can return home soon! Keep us posted as to how you are doing!

Hi, I have lost about 10 pounds in the past month, due to all of the vommiting ( I suspect Gastroparesis, although an appt on Mon will confirm it). I am wodering how long this continues, Im not actually complaining about the weight loss becuase being sick and not active has caused me to gain some... so this isnt a bad thing, just wondering how long this goes on for, and if when they get the GP under control... this will even out again.

Katherine, do you have POTS as well as RLS? I do know that the POTS causes alot of weird symptoms, that I would have never suspected anything else... but then I saw an article on RLS and thought it sounded alot like what I feel. But I must say, sometimes my legs just ache......I dont know if you would call ache pain or not but... its annoying and it is a bit painful! Thanks for the replies!

Hi, thanks for the reply, I actually did ask the pharmescist and they could tell me!

I take Gabupenten 800mg 4 times a day, and take Vit E, B Complex, And a Multi Vitamin 1 time a day. I am just wondering how long in between I should be taking the meds and Vit so they dont counter act. The Vits are suppose to be taken in the AM- but they usually get pushed back till the late Am- so I can get my meds in. Any ideas?

I had a sore throat and a 1/2 a dozen canker sores 2 weeks ago.. and slowly that is all going away, but in that period my voice became very scratchy, and it was hard to talk really loud. All off the other junk went away, but I still have a very scratchy voice, an it is ALOT quiter then I have ever talked! People actually say 'what?' instead of 'Shh!! Not so loud!'. A good friend of mine said that her dr told her that that was a symptom of acid reflux(she does not have POTS). Well for the past 2 months I have had alot of acid reflux and the continueouse vommiting after eatting. Do you think this POTS or the acid reflux is doing this to my voice? My throat doesnt really hurt anymore, its just I sound like crap!

I just read an article on Restless Leg Syndrom, and it seems to be alot of what I experince on a regular basis in my legs. Does this have anything to do with POTS? I know that your legs can ache and be weak with POTS- but like it says for RLS- I have it mainly at night, and wake up with it in the morning- and it is awul, but when I get out of bed it disappears very quickly. Think it is worth asking my cranky dr about?!

Kel, glad this helps you, I to have found that getting up- even tho it can be awful, is better in the long run, then layin in bed for such a long time. I'm better to take a nap during the day if Im tired then sleep in. Good luck!

I was on lyrica for a month for nerve pain, for me I ddint have any reactions to it. However it did not help me at all. Everyones different tho, a friend of mine is on it and it really helps her. Good luck, hope it helps ya!

Just wondering if there are any vitamins/supplements that anyone takes for there POTS? And if it helps any! People that do NOT have POTS have suggested enzymes, magnesium, Vit B and C and calcium. Everyone means well, but what is actually going to help, and what is just going to go right thru?! Any one find anything helpful?

lthmas521, thanks for the reply/link. My drs dont really seem to think about the fact that nothing is getting absorbed. They gave me some stuff for the vommiting, and I am being sent to a GI for some tests..... my dr thinks that the POTS is affecting the digestive system... till then most everything I eat, except breads, somes back up. will have to ask about an injection! Thanks!

lulu, thx for the info on the sores! My dr gave me a prescription for Regulan(sp??) for the vommiting, altho have not taken it yet, thinking I'll just wait and go see the GI and go from there! What are your experinces with it? Anne, have you ever had the vommiting with the GP? If so, does the Prilosec help with that? What about the acid reflux? THANKS EVERYONE!!

Thanks for all the great info! I have ben on a B Complex vit. for about 3 weeks now, however my main concern is that it is not staying down. It is a time release vit, and they say take it with a meal, however I take it right before going to bed, there is usually something still in my stomach, becuase the GI problems that I ahve are, I cant keep anything down- after I eat, most everything comes back up. So I thought it would be best to take the vit at night so it at least had 12 hrs to 'wrok'. It really is frustraiting that my GP didnt do anything, she knows I have POTS and have been throguht alot, the least she could have done would have prescribed something for the pain! I am giving my mouth till Monday, otherwise I am going back in, and will demand med and blood work! Thanks for all the info!

It has been a week now, that I have had 7 canker sores in my mouth, a tongue that feels completely burnt, and a cold sore on my lip, that isnt going away. My mouth hurts so bad I can't even use toothpaste! And I eat warm or cool foods that dont require chewing, or very little. Has anyone else ever had this many at once? It just came on out of nowhere. I was wondering if it was from all the acid from vommiting (GI stuff). It hurts to talk too! Went to a GP and they said everything was fine... my throat, ears, tongue.... but I sure dont feel fine! Any ideas?? I hate to blame everything on POTS, but this is kinda weird!

I have a ? for all those that are/ or have been bed riddden! My mom continues to ask what is the 'worst case scenario' for my POTS, aside from the fact that I REALLY dont know, I tell her that alot of times people are bed ridden, and to me, thats bad! She then went on to ask what BR people do all day! And if they continue to see other DRs, and try new meds. WEll to be honest, again, I dont know. So can any of you fill me in a bit about being bed ridden, so I can better educate her! Thanks! And to all of you that have or are BR, I'm very sorry, and you are in my prayers! ~Peace~

Excited becasue my dr is sening me to a GI for some tests... hopefully we can get some of this stuff worked out!